Birmingham-headquartered charity, Little Hearts Matter, has received a £10,000 donation which will allow it to continue to inform and support people living with half a heart. The donation was a proportion of £65,000 recently donated to a number of causes by the Equilibrium Foundation, the charitable giving arm of Handforth-based Equilibrium Financial Planning.
Single ventricle heart condition is a rare congenital disability, with around 450 children diagnosed in the UK each year. The condition is when a chamber of the heart is underdeveloped, and this can be diagnosed during pregnancy. It is an incurable disease, although palliative treatment is improving and allowing more of those living with the condition to live into adulthood.
Little Hearts Matter supports families on every step of the journey from antenatal diagnosis through to living with the condition as an adult. By providing its members with information and support, the charity helps patients and their families make informed decisions while connecting them with a wider community so they are not on their journey alone.
Lee, father to a young child with half a working heart, said: “From the day of diagnosis, Little Hearts Matter has provided a wealth of knowledge and support. The information they gave helped us to get our head around everything that we’d be facing.”
Each year, Little Hearts Matter needs £400,000 to fund its telephone support line and lifeline social media groups, as well as sponsoring booklets with the NHS that explain treatments or how being a child with half a heart is different and supporting memorial care to families who lose their child along the way. The Equilibrium Foundation donation has contributed to the charity’s general fund that facilitates this core work.
The pandemic made the work of Little Hearts Matter all the more important. Those with the condition are classed as highly vulnerable, making what can already be an isolating experience even more so. During lockdowns, the charity’s services moved online and it hosted coffee mornings, cheese and wine nights, a Christmas party and weekly youth groups with games and discussions. Although in-person events are now resuming, there is a demand from members to keep these online services as it connects the community and family of those affected by single ventricle heart condition across the whole country.
Max, a 14 year old living with half a heart, said: “The Little Hearts Matter youth group gives me hope that I am not in this battle alone and there are people I can turn to who make me feel calm and who I know understand me.”
In addition to providing information and support, Little Hearts Matter works closely with the NHS and cardiac specialists, is a voice for its members in arenas for change and acts as a patient representation body in research around the condition.
Debbie Jukes, Partner and Head of Client Care at Equilibrium Financial Planning, said: “For sufferers of a single ventricle heart condition and their families, accessing solid information can be difficult so having Little Hearts Matter on hand to give these services free of charge is a lifeline for many people. Being able to support charities such as this through the Equilibrium Foundation and make a meaningful difference in people’s lives is something we’re extremely proud of.”
Suzie Hutchinson, chief executive and service lead at Little Hearts Matter, said: “The last few years have been challenging ones for the children and families that Little Hearts Matter supports. Never has it been more important for the charity to offer the helping hand to families stressed and frightened by the knowledge that life when you have just half a heart will never be normal. Without the support of organisations like Equilibrium we would not be able to do what we do. More families would be isolated and more children would be frightened. Thank you.”